Our Redirected Flight

Our Redirected Flight

Tuesday, February 15, 2011

Second attempt at AFO's

Grayden had an appointment on Monday to be casted for the third time for a pair of night time use AFO's (ankle foot orthotics).  The doctors think that although he seems to have good ROM and movement he is slightly limited in his plantar flexion ROM (pointed toe) so they believe it would be a good idea to put him in AFO's at nighttime to stretch.  He was previously casted back in November and technically received his first pair back in December; however I did not like the quality of the AFO or how his foot/ankle looked in them so he never wore them.  The physiatrist also did not like them when he saw them so we attempted to get a new pair made in December; however because of insurance issues we were not able to get them.  I offered to pay for the second pair so that we wouldn't have to wait, but believe it or not, those puppies cost 1500.00 a pair so there was no way I was about to drop that much money on something he would outgrow in about 2 months.  Also, with the new therapy we have recently started (Feldenkrais-more to come on that later), I have been second guessing the use of the splints anyways so I really didn't mind waiting.

Wednesday, February 9, 2011

Preliminary Study Results

We received an e-mail today from the Study Coordinator at CHOP with a newly published article from the chief surgeon of the study with the preliminary results of the study.  The MOMS Trial has concluded early, after 183 (instead of the planned 200) women enrolled to allow women the choice of having prenatal surgery due to the benefits that were seen in the preliminary outcomes.  The results look very positive regarding the prenatal surgery.  I can't help but feel a little sad that we weren't in the percentage that had improved outcomes with the decreased need for a shunt, but I am still feeling very grateful to have been/be a part of this study and to have been chosen for the prenatal surgery. 

There was also an article published in the NY Times today as well as a segment on NPR if you are interested in reading/watching them.  They also did a segment on the Nightly News and will be airing a segment on the Today show tomorrow morning (Thursday).  I am just hoping that with all this press, that the impression is not given that this surgery cures Spina Bifida.  Grayden has Spina Bifida and will always have Spina Bifida.  He will still face challenges in his life that he will have to overcome.  We are hopeful that the surgery helped to maintain some function that he may not have otherwise had; however only time will tell.  Surgery or no surgery we expect him to do great things. 

I am hoping that this study is just the beginning for the research that they will continue to do on Spina Bifida.  So much more needs to be done on the prevention and treatment of this very common birth defect.  Grayden and all of the other amazing kiddos we have met with Spina Bifida will do amazing things in their lives, but I know if we parents had the choice, we would prefer that there was no such thing as Spina Bifida.  I am glad to have been part of something that will hopefully continue to change the future for these kids.  It was a huge sacrifice, not without its complications but totally worth it. 

I love this little laugher sooooo much!!